Restless Legs Syndrome (RLS) Discussion Board

A week ago, I'm outside at 3 AM on a nice balmy, beautifully lit night, walking around the house...round and round trying to relieve the Crazy Legs. A couple rabbits are darting around making me a little jumpy cause I don't wanna step on one, I'm trying to dodge Spider Webs where I think they may be. Oh man, Spider Webs creep me out, 'specially in the dark...near the Fence around the Doughboy, around the Grapevines, by the Deck. Wondering if the raccoons are going to scream 'cause I've startled them if they're making the garbage can rounds, Trying to stay away from those weeds that are real low to the ground and have the needles sticking out...I'm barefooted. Walking in between my car and my daughter's car...lap one, around the downspout. I feel like "Sport" in "To Kill A Mockingbird", the scene where she's wearing that big ham walking through the woods, or even Boo Radley, an outcast who only comes out at night. I'm talking and singing to myself...some dumb Tom Waits song...Warm Beer Cold Women...

Must have looked ridiculous and I'm thinking the whole time, one of the neighbors are going to wake up to pee or something and see me out there and call the cops.

Haha. What am I going to say?
"Yeah sure you do sir...come with us."

I was just wondering if it's happened to anyone. Getting the Police called on them for acting suspicious in the middle of the night?

Not me. I used to walk all the time - I was in the country, though. Now I'm in a big city - no one would pay any attention to me at all, except maybe the rats! The suburbs could be more difficult. Just stick to well-lit streets and don't skulk around people's windows. No peeking!

Oh, I did run into a nasty dog one night - but I escaped. That was back in the college days. Never police or anyone yelling at me, though.

Ann

have you ever thought about writing stories? i think you have a talent there!

For real. I'll second that. Get out your pen and paper, typewriter or whatever you need. Keep us updated!

Ann...nasty dog? How'd you escape...up a tree? Did you know you were that fast?

Write stories? Nawww...I just tell em.

Been there, done that. Sounds like me at times only I'm not so eloquent! Did have an encounter with a snake once though. Saw it just before I stepped on it. If you knew my life history you would know that snakes look for me because they get such a kick out of scaring me. Then they go home to their snakey families and share the story of once more scaring the bejammers out of that crazy lady that has a phobia about them. Anyway, I am now a firm believer that people can fly without aid of wings. I know my feet never touched the ground until I was back on the porch scrabbling for the doorknob in the dark. BUT, once my heart found it's normal beat again and I had changed underwear, my legs didn't bother me the rest of the night!

Yeah Ruby...you guys (ya'll?) have some REAL snakes in Missourri dontcha.

I live near Lake Michigan in Indiana...we have Garter Snakes. I hear we have what they call "Sand Rattlers", but I don't know...I never saw one. And I hope I never do, 'specially at 3 Am under my foot.

I was in Missourri a few years back. In a cave Jesse James and his gang hid out in after they robbed a bank or a train. It's lit up now. Anybody could find 'em in there now I guess. There's a huge pendelum they hung in there that swings...once you get it going I think it swings forever. And you wind through these tiny damp passages 'til you get to this big room with a Theatre set up in it. Kate (I CANT THINK OF HER NAME) (@#$*&^) sang there. A huge American Flag is projected on the wall and you can sit and listen to the recording as she sings..."God Bless America" or something patriotic. She's a big woman and she has an even bigger voice. I'm 46, I know this lady. it's not coming. Help....I'm OLD. I need to walk around the house.

Was it Kate Smith? Or was that one of Charlie' s Angels? Anyway, I know who you mean. And yes we have some big snakes here. Of course when you are as scared of them as I am, they ALL look HUGE! Hope your legs give you some peace. Love, Ruby

Kate Smith. Thank you. I actually thought it of earlier today.
Kate Jackson...heh. Does she sing?

Legs are doing great with the Klonopin and Neurontin and Vicodin. Thanks.
But Ann is scaring me a little with the Klonopin Withdrawal story.
I see the Neurologist Wednesday so I'm gonna have to have a heart to heart with him.

That's me, Ms Scary .

I forgot to answer your earlier post, Randy, about the dogs at midnight. It was finals week at college. My college roommate and I, still best friends after all these years, were out walking in Bloomington, IL at about 1 AM. We really didn't want to study, and I had some mild RLS. It gave us a good excuse to put down the books and go for a walk. The night was beautiful, early May, a gentle breeze touching our faces as we walked through the streets. It was a little cool, but the night was full of summer promise.

There were some street lights, but it wasn't too bright, just bright enough to see our way. We were talking and giggling, enjoying the break from studying. We heard a sound and looked to our right while we casually continued to walk and talk. We turned our heads in time to see a large mongrel dog leap off of a porch and run toward us faster than I've ever seen any dog move. I was mesmerized by the dog's movement and I'm not sure I did much more than jump internally within my own skin. It wasn't more than 25 feet from the porch to the sidewalk - what, maybe 2 seconds of all-out running and snarling? As the dog reached the sidewalk, his head snapped sideways and backwards - he was on a chain. It stopped him about a foot away from us. He stood there growling and barking, drool and spittle flying from his jowls.

We both awakened from our trance and moved farther away from him and walked quickly by as he kept pace with our progress. I don't remember much more about our early morning walk. We continued to take walks together at night and in the early morning hours, but we never walked on that street again.

Subject change: Klonopin. Vicodin. Neurontin. Every one of these drugs screws with your central nervous system. Every one of them must be stopped gradually because they change the way your brain works, replacing the current chemicals you create and how they are used. Your brain can't immediately change production of chemicals to take the place of them when they are stopped. Every one of them creates dependence, and two of them (I'm not sure about Neurontin), may have tolerance.

That doesn't mean they shouldn't be taken. These all can be very helpful drugs in managing severe RLS. It does mean that we need to respect them. Doctors often don't respect them enough, or are afraid of them and won't prescribe them. There is a middle ground. I like to think that drug holidays are the perfect middle ground. They are not well known among doctors, however, and I've had more than one look at me like I was crazy when I suggested them. Yes, it can really suck to take a holiday from a drug or drugs that are working, but they can prevent tolerance and dependence, two excellent reasons to take them.

If you're lucky, you can substitute Ambien for the Klonopin, and Ultram for the Vicodin.

Here are some links I just found;

http://www.ncpainmanagement.com/DrugHolidays.htm

And a post from the RLShelp.org site: " Six weeks is a little long for drug holidays, but this is an individual thing. For Ultram, a drug holiday of 2 days every 3 weeks would probably be easier on you and even more effective to prevent tolerance and addiction.

You should do a drug holiday on only one drug at a time. This will also make it easier for you. The Klonopin needs a longer drug holiday than most of the other drugs. These should be 4-7 days. The symptoms that you are experiencing with your drug holiday may be due to Klonopin withdrawal."

OK, beddy-bye time for me.

Ann

Ann...I've never been able to become a dog lover for that reason. Walking by someone's house and some mangy wolf barking and snarling and causing all that commotion. Plus, all that hair all over the house. Anyway, good story.
I had an attack dog turned on me once. Never been so shook in my life. Huge German Shepherd leaping over the desk at me. He'd have killed me if the guy hadn't grabbed his collar. He wanted to kill me. NO doubt. He HATED me. It was like the Devil himself coming at me. Wes Craven could not have come up with a scene that scared me more. And the guy started yelling..."OFF" "OFF" ...and the dog had to "shake it off"...it was strange. The dog started wimpering and shaking his head, trying to turn himself off. Then, 2 minutes later, the guy sent the thing over to my side of the desk to "apologize", and the dog was as friendly as you.
Me on the other hand...I kinda gave him the cold shoulder. heh.

I don't like the sound of all this you're saying about the chemical dependence. I'm a big dummy about all this medication. Not to keep talking about myself...Lord we don't need that...but you know Ann, I've been taking 4 Ibuprofen every night at bedtime since I can remember. Along with my leg pain during the day...I've been taking probably 8 - 12 most days of my adult life, and I'm 46. So is what I'm taking now any worse for me than that? Plus...all this memory loss and other things I've read on this board. Ugh.
Tell you the truth, my Wife and kids and I have always gone to the High School football game on Friday nights. We don't drink or party, and it's a good way to see all our crazy friends and have some fun. Anyway, this year, it seems like I can't really remember details of the games like I used to. We do a local football show here in Portage, highlites and all that stuff, and I have to go and re-watch the game before I can remember what the heck happened in it. Think it has anything to do with the drugs?

I'm going to have to write out a list of things to ask the Dr. who I see tomorrow.

Thanks everybody for your help and friendliness.

Randy

Randy, I only have a second, but. . .the memory loss? In my opinion it is either Klonopin or lack of sleep. Klonopoison, as one of the women on the benzo board calls it, it notorious for creating fog in people. They often don't realize how much until they stop taking it.

Sleep loss wreaks havoc in memory. Lots of studies.

So, the key is to find meds that keep you asleep, but that work for YOU in terms of side effects. We are all different - some people do not have any problems with Klonopin at all. I do. Other don't have any problems with Neurtonin (another one that creates fog for people). I do. Maybe I'm just sensitive.

I still haven't found the best combo. Still searching, but I will find it.

Ann

Ann...quickly
The Doc dropped the Klonopin today for Vicodin.
Vicodin and Neurontin is the new combo.
He says till I need more than ONE Vicodin...then it's time for the Holiday at which time Klonopin will be the drug again.

What do you think?
I kind of like it, because I have a lot of leg pain too.
But I just wanted your opinion.

Sounds good. Here's what I like even better, though.

Try the vicoden and neurontin. See how you feel compared to the nuerontin and Klonopin. Then, try vicoden only. See what happens to your memory and the fogginess. You won't know what is causing what until you try them apart, alone, etc.

From a standpoint of dependence, addiction, and tolerance, his idea is a good one. Vicoden and Klonopin are completely different classes. No problem of cross-tolerance there. But, they really do very different jobs. K won't help with pain, V will. V probably won't help with falling asleep (though it might) and K will. And V probably won't help with PLMD, and K might.

Another thing to just be careful about is dependence. You can build dependence and not have tolerance or addiction. So, your body is used to it, needs it, and is annoyed when you stop it. But you still haven't gotten to the point where you need more of it. See where I'm going? If you take the V for 3 months, let's say, but still don't need more of it, you're probably dependent on it. If you stop it abruptly and take the K, you could get sick for a few weeks until your body adjusts. It isn't a horrible sick, but sick is still sick.

And, for the worst part, stopping opioids once you are dependent on them makes your RLS much worse for a time period How long? Not sure. I haven't done much research. But for a week at least and maybe longer.

Does it mean you should do something different? Not necessarily. It's a good starting place. You can see how you feel and what your options are. Get rested and then make a decision.

Mostly, I'm thinking he's a good guy to come up with a solution at all!

Ann

OK Ann.
Thanks again.